CARE Act Enables Family Caregivers at Hospital Level

By Amy Baxter | December 22, 2015

When it comes to retiring, the vast majority of Americans want to remain in their own homes and age in place, relying on home health aids, home care or family caregivers to help them with medical conditions and day-to-day management.

As a larger portion of the population ages, the roles of family caregivers continue to expand, and a need for a common-sense approach to enable caregivers to perform tasks and stay on top of care at home is essential.

There are approximately 40 million family caregivers in the U.S. who provide unpaid support for aging parents, relatives or friends. The cost of unpaid caregivers reached $470 billion in 2015, according to a national report, “Valuing the Invaluable: 2015 Update.”

While the average caregiver in the United States is a 49-year old female, typically taking care of a parent, the caregiver demographic has changed over the last several years. Additionally, the role of a family caregiver has shifted.

“You’re seeing more and more people struggle to do this while doing other things,” Anna Gorman, a senior correspondent with Kaiser Health News (KHN), said during a webinar on the roles of caregivers. “The sandwich generation is taking care of kids, working full time and caregiving. They are also being asked to do things that they don’t know how to do. Financially, it’s a big burden, it’s a big hit.”

Caregivers today are providing more support than in the past in a variety of duties, such as bathing, dressing, feeding, medication management, wound care, transportation and more, according to AARP.

The problem is in a lack of coordination between family caregivers and hospitals and rehabilitation centers. According to AARP, most family caregivers receive “little or no training to perform these tasks.”

Without providing direction and clear care instructions for family caregivers, some patients may end up back in the hospital after being discharged to recover at home.

While there are some initiatives involve family caregivers at hospital and rehabilitation settings, few federal bills have gained traction to enable caregivers.

The Recognize, Assist, Include, Support and Engage (RAISE) Family Caregivers Act was recently approved in the U.S. Senate. The legislation would develop a specific strategy for the Department of Health and Human Services (HHS) to support caregivers. It is not clear if the bill will be approved in the House or be signed into law in the future.

One of the most effective measures has come from the local level through the The Caregiver Advise, Record, Enable (CARE) Act. So far, 18 states and Puerto Rico have approved the act.

Provisions of the CARE Act

While states are taking their own versions of the legislation to better able caregivers, the meat of the act is still largely the same, focusing on three important measures:

1. Recording the name of the family caregiver when a loved one is admitted into a hospital or rehabilitation facility in medical records

2. Notifying the family caregiver if the loved one is to be discharged to another facility or back home

3. Providing live instructions of medical tasks and explanations for the family caregiver who will perform the tasks at home

“This is a really big deal,” Gorman said during the webinar. “It could fundamentally change how caregiver will be brought into the medical team. The CARE Act brings caregivers inside the circle.”

By enabling caregivers before their loved ones arrive home, the act could help reduce hospital readmissions and result in better patient outcomes.